ABSTRACT
To describe experiences of disability among adults living with Long COVID. We conducted a community-engaged qualitative descriptive study involving online semi-structured interviews. We recruited participants via collaborator community networks in Canada, United Kingdom, United States and Ireland. Adults who self-identified as living with Long COVID, defined as signs and symptoms that develop during or following an infection consistent with COVID-19, which continue for 12-weeks or more and not explained by an alternative diagnosis. We purposively recruited for diversity in country, gender, age, sexual orientation, and duration since initial COVID-19 infection. Not applicable. We used a semi-structured interview guide to explore experiences of disability living with Long COVID, specifically health-related challenges and how they were experienced over time. We asked participants to draw their health trajectory. We conducted a group-based content analysis. Among the 40 participants (10 per country), the median age was 39 years;majority were women (63%), white (73%), heterosexual (75%), and living with Long COVID for ≥1 year (83%). Participants described their disability experiences as episodic in nature, characterized by fluctuations in presence and severity of health-related challenges (disability) that may occur within the day to over the long-term living with Long COVID. They described living with 'ups and downs', 'flare-ups', and 'peaks' followed by 'crashes', 'troughs', and 'valleys', likened to a 'yo-yo' 'rolling hills', and 'rollercoaster ride' with 'relapsing/remitting', 'waxing/waning', 'fluctuations' in health. Illustrations demonstrated trajectories of health dimensions, some more episodic than others. Uncertainty intersected with the episodic nature of disability, characterized as unpredictability of episodes, their length, severity and triggers, and process of long-term recovery, which had implications on broader health. Experiences of disability were described as episodic in nature, characterized by fluctuating health challenges, which may be unpredictable among this sample of adults living with Long COVID. Results will help to better understand experiences of disability among adults living with Long COVID and inform approaches for rehabilitation. None.
ABSTRACT
To describe experiences of disability among adults living with Long COVID. We conducted a community-engaged qualitative descriptive study involving online semi-structured interviews. We recruited participants via collaborator community networks in Canada, United Kingdom, United States and Ireland. Adults who self-identified as living with Long COVID, defined as signs and symptoms that develop during or following an infection consistent with COVID-19, which continue for 12-weeks or more and not explained by an alternative diagnosis. We purposively recruited for diversity in country, gender, age, sexual orientation, and duration since initial COVID-19 infection. Not applicable. We used a semi-structured interview guide to explore experiences of disability living with Long COVID, specifically health-related challenges and how they were experienced over time. We asked participants to draw their health trajectory. We conducted a group-based content analysis. Among the 40 participants (10 per country), the median age was 39 years;majority were women (63%), white (73%), heterosexual (75%), and living with Long COVID for ≥1 year (83%). Participants described their disability experiences as episodic in nature, characterized by fluctuations in presence and severity of health-related challenges (disability) that may occur within the day to over the long-term living with Long COVID. They described living with 'ups and downs', 'flare-ups', and 'peaks' followed by 'crashes', 'troughs', and 'valleys', likened to a 'yo-yo' 'rolling hills', and 'rollercoaster ride' with 'relapsing/remitting', 'waxing/waning', 'fluctuations' in health. Illustrations demonstrated trajectories of health dimensions, some more episodic than others. Uncertainty intersected with the episodic nature of disability, characterized as unpredictability of episodes, their length, severity and triggers, and process of long-term recovery, which had implications on broader health. Experiences of disability were described as episodic in nature, characterized by fluctuating health challenges, which may be unpredictable among this sample of adults living with Long COVID. Results will help to better understand experiences of disability among adults living with Long COVID and inform approaches for rehabilitation. None.
ABSTRACT
INTRODUCTION: Our aim was to describe episodic nature of disability among adults living with Long COVID. METHODS: We conducted a community-engaged qualitative descriptive study involving online semistructured interviews and participant visual illustrations. We recruited participants via collaborator community organisations in Canada, Ireland, UK and USA.We recruited adults who self-identified as living with Long COVID with diversity in age, gender, race/ethnicity, sexual orientation and duration since initial COVID infection between December 2021 and May 2022. We used a semistructured interview guide to explore experiences of disability living with Long COVID, specifically health-related challenges and how they were experienced over time. We asked participants to draw their health trajectory and conducted a group-based content analysis. RESULTS: Among the 40 participants, the median age was 39 years (IQR: 32-49); majority were women (63%), white (73%), heterosexual (75%) and living with Long COVID for ≥1 year (83%). Participants described their disability experiences as episodic in nature, characterised by fluctuations in presence and severity of health-related challenges (disability) that may occur both within a day and over the long-term living with Long COVID. They described living with 'ups and downs', 'flare-ups' and 'peaks' followed by 'crashes', 'troughs' and 'valleys', likened to a 'yo-yo', 'rolling hills' and 'rollercoaster ride' with 'relapsing/remitting', 'waxing/waning', 'fluctuations' in health. Drawn illustrations demonstrated variety of trajectories across health dimensions, some more episodic than others. Uncertainty intersected with the episodic nature of disability, characterised as unpredictability of episodes, their length, severity and triggers, and process of long-term trajectory, which had implications on broader health. CONCLUSION: Among this sample of adults living with Long COVID, experiences of disability were described as episodic, characterised by fluctuating health challenges, which may be unpredictable in nature. Results can help to better understand experiences of disability among adults living with Long COVID to inform healthcare and rehabilitation.
Subject(s)
COVID-19 , Post-Acute COVID-19 Syndrome , Humans , Female , Adult , Male , Ethnicity , Ireland/epidemiology , Qualitative ResearchABSTRACT
INTRODUCTION: As the prevalence of Long COVID increases, there is a critical need for a comprehensive assessment of disability. Our aims are to: (1) characterise disability experiences among people living with Long COVID in Canada, UK, USA and Ireland; and (2) develop a patient-reported outcome measure to assess the presence, severity and episodic nature of disability with Long COVID. METHODS AND ANALYSIS: In phase 1, we will conduct semistructured interviews with adults living with Long COVID to explore experiences of disability (dimensions, uncertainty, trajectories, influencing contextual factors) and establish an episodic disability (ED) framework in the context of Long COVID (n~10 each country). Using the conceptual framework, we will establish the Long COVID Episodic Disability Questionnaire (EDQ). In phase 2, we will examine the validity (construct, structural) and reliability (internal consistency, test-retest) of the EDQ for use in Long COVID. We will electronically administer the EDQ and four health status criterion measures with adults living with Long COVID, and readminister the EDQ 1 week later (n~170 each country). We will use Rasch analysis to refine the EDQ, and confirm structural and cross-cultural validity. We will calculate Cronbach's alphas (internal consistency reliability), and intraclass correlation coefficients (test-retest reliability), and examine correlations for hypotheses theorising relationships between EDQ and criterion measure scores (construct validity). Using phase 2 data, we will characterise the profile of disability using structural equation modelling techniques to examine relationships between dimensions of disability and the influence of intrinsic and extrinsic contextual factors. This research involves an academic-clinical-community partnership building on foundational work in ED measurement, Long COVID and rehabilitation. ETHICS AND DISSEMINATION: This study was approved by the University of Toronto Research Ethics Board. Knowledge translation will occur with community collaborators in the form of presentations and publications in open access peer-reviewed journals and presentations.